Son's Diagnosis Changed!!!

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Our family sure has been through a lot since my son had his first seizure at school March 8th! The first 2 seizures were 12 days apart; both at school and in PE. After the second seizure, we were referred to a nuerologist and an EEG was done. The EEG suggested focal seizures on the left side of the brain. When we saw the neurologist, he also ordered an MRI and suggested my son had partial seizures and were going to treat it with trileptal. About 3 weeks later, my son had another seizure at school while still on the medication...the same type...another grand mal. We have upped his dosage to the full dose for his weight he can have, and continues to have seizures...I suspect he's having them at night while we are sleeping, because I'm pretty sure I've seen a couple that looked questionable...that when I described to the nurses at our Dr.'s; they suggested it was a tonic seizure. His last seizure was different; also at school- he dropped and lost all muscle tone. Before that, he was dazed and confused and wandering. While his class went in one direction, he went in another. He couldn't walk for a while...when he could, he could talk and respond, even though it was delayed. But, he doesn't remember what was being said, or who was saying it asking him about it later. I also found out that when I was talking with him after his last seizure, he didn't even know who I was...and said, 'Some lady was talking'... Crazy!

So, after all these weird seizures we've been seeing and questionable behavior, they admitted him to the hospital for a vEEG and literally NO JOKE...he had so much high voltage spikes every few minutes that they actually released us a day later; even though they told us to be prepared to stay the whole week. I was glad they got the information they need, but terrified my son is a walking time bomb while ON medication, that they would able to see enough so quickly to now diagnose my son with Primary Generalized Epilepsy. He has not specified the category yet. I'm dumbfounded and not sure how to take all this in. I was told that he will not grow out of this; as was believed when they said he had partial epilepsy. We are now weaning him off the trileptal and putting him on divalproex (a generic). He has had no side effects so far and no more seizure activity so far...however, his seizures are always sudden and out of the blue...so, it's hard for me to not watch him like he's a walking time bomb seeing what was literally going on in his brain. It was sooo crazy to see that!
 

Nakamova

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Here's hoping the divalproex gives him better seizure control than the Trileptal did. There can be some trial-and-error with epilepsy meds, so keep trying if the valproex doesn't help.
 
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Yes, we are very hopeful...just not thrilled about the side effect of possible liver damage and weight gain. He's already gained so much by being on the trileptal in just a few short months.
 

donnajane

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Sounds like you have got a great medical team who was prepared to have him in hosptial for a week to monitor him.
Hopefully the new med will work for him.
I know its a lot to take in but think how much more they will be able to help him with this new information from his EEG. It may still be a bit trial and error but now they know more what they are dealing with.
Please keep us updated re how he is going.
Take Care.
Donna
 
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I definitely feel blessed with his nuerology team! They were so awesome with us! We have had to drive so far, but, it's been worth it. One of the other Dr.'s in that department who sees my other daughter (for migraines), came in and spent at least an hour talking with me about what they saw and answering all my questions; in addition to his neurologist coming in a few times as well to check in and answer questions. We do have the answers we needed. They weren't the answers we wanted...but, knowing is better than not knowing. So far, he's had no issues changing over his medication. Fingers crossed this continues...we are stilll weaning from the other as well.
 

KarenB

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Valproic Acid (the one you son is on now) is a good med for treating a whole lot of different type of seizures (whereas Trileptal is more for very specific types).

Our son was on Trileptal for several months (didn't work) and then put on Valproic Acid. It didn't really help until we combined it with the Ketogenic Diet (and then he became seizure free). But then he had to be weaned from the Valproic Acid because his liver enzymes were getting too high.

I highly recommend looking into the Ketogenic diet -- it can work wonders for many kids.
 
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